The Autistic Family

by Sylvia Farley  

The following definition is from the Autism Society of America:

AUTISM is a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. It occurs in approximately fifteen out of every 10,000 births and is four times more common in boys than girls. It has been found throughout the world in families of all racial, ethnic and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.

Now that is a relief, because when my son was a child, the condition was only just being recognised and the most popular approach was to blame the mother for poor parenting, especially if she were a lone parent.  In theory, by her strength she undermined the normal social development of her male child.

Odd that it only affected one of my male children, whilst his brothers and sisters developed normally, but we psychologists can remake reality to our own specifications just as we please.

Most of the writing on Autism has been about children because of the resources needed to educate them.  There is much less on adults with autism, but such children do not outgrow their disability.

Autism is a condition that limits not only the life-options of the  autistic child himself but of his parents and his siblings too.  It is also a challenge that they can meet together and I want to tell you how we did exactly that. At the time, I did not care what label they put on my son.  We had to cope with him and he with us from day to day.

For all of us it has been an exercise of 30 years of trial and error with many frustrations, challenges and triumphs.

I want to share our experience of socialising an autistic child, alienated, isolated and aggressive, to become a mildly eccentric adult, morally sound, self-directed and reasonably independent, with his family relationships intact.

The first indication that there was something odd about my bright-eyed baby boy was that he never wanted to be picked up or cuddled.  He developed an early allergy to milk so did not nurse and the only time I could satisfy my own need to sit and love him was when he was asleep.

He did not walk until he was almost two years old and did not speak until he was three. He still could not read at seven and taking him to school was an ordeal for us all.  He was genuinely terrified and had to be dragged there, screaming, to spend most of his day rocking, alone and miserable in a punishment corner.  Whatever he did was accompanied by ritual, shaking his head, touching his foot behind him at every step, insisting on the same foods, the same clothes in the same order, the same forms of words and becoming extremely distressed at any change.

There was speculation that brain damage at birth had prevented him from screening out redundant information and that he was constantly bombarded by extreme sensory overload which he could only control by shutting it all out, hurting himself, opting out into a fantasy world of his own, refusing to interact with the world around him or learn its rules.

He refused to eat, to maintain personal hygeine, to communicate, co-operate or even acknowledge our existence except for sudden bouts of frustration and aggression.

This may not sound much of a problem unless I explain that he constantly soiled himself and the furniture and attacked his sister with a pair of scissors, broke my finger and screamed or simply lay down in the street and refused to move.

Yet there were times when he was quiet and brave, a lovely tiny man and a true stoic, walking with us for miles in the countryside or bearing pain with patience and fortitude.

In common with other parents of autistic children, I had discovered that these wonderful oases of calm occurred after he had provoked some form of aggression, been soundly smacked or shouted at, and retired to his room in tears.  It was as if the emotional storm cleared the air for a while and he was able to join us, laughing and playful, speaking and functioning for a short while as he really were the child he might have been.

The other children devised their own ways of relating to him, including his rituals in their play and teaching him to tolerate change in a form of words by introducing him to puns, an excruciating form of humour which exactly complements his literal-minded taciturnity and which he indulges to his own amusement to this day.

They included him when he wanted to be included, ignored him when he did not and punished him when he went beyond their limits, unencumbered by the guilt that prevented me from adapting their demonstrably successful tactics.

These were exactly the strategies adopted by Blakely Hospital when finally, at the age of seven, he was accepted on a special regression and family therapy course where he joined a group as the baby and over several months moved up the hierarchy until he was helping to parent the latest arrivals.

At this time there was one of those beautiful moments that makes it all worthwhile.  For years I had tried to teach him to read without success. Janet and John and the train to Updown interested him not in the least.

I visited him every night at Blakely, but apart from peeping round the door to see if I were there, he ignored me totally.

I continued to reinforce his security simply by being there on time and making no demands of him.

Then, one evening, he bounced into the visitors room, asked if I would like him to sit on my knee and read to me, snuggled into my lap and began, “Wolfgang Hyena, the astronaut, undocked his space capsule for a soft landing on the Moon…”

When he came home there were still problems but occasionally we had glimpses of a richly creative mind as he described seagulls following a tractor “as if someone had tipped out a waste-paper basket”.  Looking up into the  dark, soaring pines of an autumn forest interspersed with orange and gold maples he whispered, “It’s just like music, Mum.”

He progressed erratically, but he progressed.  He could read the Times and remember every detail of the tonnage and displacement of a ship, or the frequencies and range of a radio station.  His idea of a fun weekend was to buy an underground ticket and visit every station on the line without coming up for air.  He travelled alone and was quite capable of telling a man who paid him unwelcome attentions that he must leave him alone or he would call the guard.

He provoked aggression from fellow students on a  special needs social skills foundation course.  Once they pulled his tie so tight they gave him rope-burn.  Once one attacked him with a chisel in a woodwork class and once they put him in a waste bin and rolled him down a hill to end up with concussion in the hospital.  Yet he took a blind girl under his wing, for the first time ever showing some sign of the theory of mind that allowed him to see things from another’s point of view. He pushed the wheelchair of a paraplegic boy and took great pride in cleaning buses on a work experience course.

After declaring that he wanted to live independently, he was offered a place on a residential course for young people from challenging backgrounds, then a home in a Carrgom Community and finally a sheltered housing project where he shares an ordinary house with three other young men with “problems in living”.

He buys his own clothes, cooks his own food, makes his own entertainment, takes himself travelling, talks to strangers and appears to be quite contented.

But he still remains lovably himself.  When I picked up the phone to hear his voice and excitedly asked where he was, he replied quite literally, “I’m on the other end of this phone, aren’t I ?”

And when he actually arrived on the doorstep with a gift for me on Mother’s Day, (the first ever) he announced that he had not come to see me but was off on a scenic tour.  He did not want anything to eat or drink, but accepted when I suggested he took a chocolate from the carton he had brought for me. When I went to take one, the box was empty. “Well, he explained, “I got peckish on the way here, but it’s the thought that counts.”

Yes, bless him. It is indeed.  

Biodata:

Sylvie has raised a family in spite of Multiple Sclerosis, and said "No to nowt", from researching light in the Arctic to building palaces on the Equator; from night-club singer to landlady providing bed, breakfast and evening meals for lorry drivers.  She is now a qualified psychologist. Her free self-esteem website is  at http://www.youareunique.co.uk